Silva C A B, Albuquerque V L M, Antunes M F R
Universidade de Fortaleza, Brazil.
Indian J Lepr. 2014 Apr-Jun;86(2):53-9.
Hansen's disease is an infectious and degenerative chronic disease with a high potential for incapacitation. Due to the explosive epidemic of leprosy cases worldwide (especially in Brazil), the social difficulties faced by these patients are an important subject for research. This work aimed to identify the stigma experienced by these patients. The qualitative research for this study was completed at the National Reference Centre in Dermatology in Fortaleza. The study took place in northeast Brazil from September 2010 to November 2012. The research subjects included 20 people with Hansen's disease of both sexes between 20 and 70 years old. The data collection consisted of a semi-structured interview. From the discourse analysis of the participants, several changes experienced by persons affected by leprosy were noted from the empiric categories emerged. Changes occurred in the family, the receptiveness of neighbours and co-workers and the patients' social lives were experienced by the persons affected after the diagnosis of Hansen's disease. From the data obtained, it was concluded that the patients are stigmatised. Sometimes they are forced to hide from relatives, friends, neighbours and co-workers. Despite their social exclusion, they believe their isolation is justified. Leprosy is a chronic, degenerative and curable infectious illness that continues to be a serious public health problem, mainly in the poorest region of Brazil.
麻风病是一种具有高度致残可能性的传染性和退行性慢性病。由于全球范围内麻风病病例的爆发式流行(尤其是在巴西),这些患者所面临的社会困境成为一个重要的研究课题。这项工作旨在确定这些患者所遭受的污名化情况。本研究的定性研究在福塔莱萨的国家皮肤病学参考中心完成。该研究于2010年9月至2012年11月在巴西东北部进行。研究对象包括20名年龄在20至70岁之间的男女麻风病患者。数据收集通过半结构化访谈进行。从参与者的话语分析中,从出现的经验类别中注意到麻风病患者经历的一些变化。在诊断出麻风病后,患者在家庭、邻居和同事的接纳程度以及患者的社交生活方面都经历了变化。从获得的数据得出结论,患者受到了污名化。有时他们被迫向亲戚、朋友、邻居和同事隐瞒病情。尽管他们被社会排斥,但他们认为自己的孤立是合理的。麻风病是一种慢性、退行性且可治愈的传染病,仍然是一个严重的公共卫生问题,主要存在于巴西最贫困的地区。